We The Alopecians

Here’s the thing about alopecians: We’re not all the same.

Some are born without hair. Some lose it so early in life they don’t remember ever having hair—or losing it. Some lose their hair in childhood. Some lose it as teenagers. Some lose it as adults. Some lose it in patches that can be covered up. Some lose it all over their bodies and don’t even have a single nose hair. Some lose it in patches for awhile, then progress to total hair loss. Some respond to current treatments such as steroid injections. Some respond to alternative medicines. Some don’t respond to any treatment at all. Some respond until they don't. Some get their hair back for no known reason. Some get their hair back every so many years. Some get their hair back during pregnancy. Some feel comfortable talking about it. Some never talk about it. Some feel comfortable only in wigs, some in scarves, some in bare scalps, some in tattooed scalps. Some can't imagine the possibility of ever being happy and hairless at the same time. Some blame all their problems in life on alopecia. Some do arrive at true self-acceptance. Some feel sexy and beautiful without hair. Some feel undateable because of their hairlessness. Some have met and married life partners. Some think maybe we shouldn’t be so self-accepting or we’ll never seek a cure. Some worry that if we joke about our bald heads, we’re not taking the disease seriously enough.

Because we have such different experiences, we do not always present a united front. Maybe that’s a good thing. Discussions and debates can challenge our own beliefs and offer alternative perspectives. When done respectfully, they can help us grow.

I cannot—and I do not—speak for all alopecians. I am just one person among the millions worldwide with alopecia. I’m on my own journey—a journey, I must add, that involves frequent evolution in thought and beliefs. Today, sixteen years after losing my hair, I’m not sure I’d welcome my hair back. I don’t even own a hairbrush, much less a curling iron or blow dryer. I rather enjoy being able to get ready quickly without having to bother with hair. I do not miss the hefty price tags of foil colors and perms and styles at fine hair salons. I have found alternative ways to feel feminine: I wear dresses, I get regular mani/pedis, and every once in awhile I wear cute heels that hurt my feet. I’m not sure I still believe a cure is necessary—a contentious viewpoint in some alopecia circles. I hesitate to publicize this viewpoint because the last thing I want to be is disrespectful.

I honestly believe the problem doesn’t lie in the loss of hair but in society’s lack of awareness and acceptance of it. I believe that bald can be beautiful. I believe that my fellow alopecians are some of the most beautiful people I've ever met. I believe there’s a place for hairlessness in the world, just as I believe there's a place for different body shapes, a variety of eye colors, a range of foot sizes. I believe in embracing our individuality and that our differences are what make us beautiful. I believe that the cultural definition of beauty just may shift one day to include hairlessness, just as it has shifted to include a bigger booty and thicker thighs.

But I also remember when I wasn't ready, or willing, or able to believe these things. So I welcome the dialogue. I agree to disagree. I am open to new ideas. And old ones. In the meantime, I place my hope on society rather than research, on humanity as opposed to a cure. And I do my best to be the change I wish to see in the world.

Enough already!

As summer rapidly approaches, and the tank tops and shorts and bathing suits march to the front of the closet, I can’t help but think about skin. About showing skin. About showing unsightly skin.

Suddenly I wish I had been more serious about that diet I started back in January. I wish I had joined a gym, hired a trainer, built an exercise habit. Something. Then maybe I wouldn’t be anticipating the summer season with such dread.

True, I’d like to be trimmer, and fitter, and healthier. I would. But this isn’t another article on how to get into bikini shape in 10 days. Or how to cleanse yourself into a size extra small. Please. (Though you know I’ve considered it.)

No, that’s not it at all. For those of us who didn’t shrink or tighten or tone as much as we wanted, the question becomes: Cover it up or bare it?

Certainly you’ve heard the commentaries. A deejay asserts that women over 35 and over 120 pounds should NOT wear a bikini, under no uncertain terms. A family member tells you it’s time to retire the tank tops until you can reduce the flap factor on your arms. A friend asks if she’s too fat for shorts.

With all this talk about what people should and shouldn’t wear as the temperatures rise, I can’t help but wonder, do we owe it to other people to cover up our unsightly skin?

And who gets to determine what is—and is not—unsightly?

I’m not just talking about fatty cells and cellulite, but also hairless heads.

One time an airline employee told me I couldn’t wear a scarf in first class. I was flying standby, on a buddy pass, and was required to follow a dress code. No jeans. No open-toed shoes. No t-shirt material. No spandex. Check, check, check, and check. Apparently Mr. Snooty Pants thought a headscarf didn’t fit the rules, didn’t look upscale enough for his taste. Nowhere on the list of rules did it say No headscarf. I wish I had whipped the scarf off my bald head and quipped, “Better?” Unfortunately, I wasn’t as strong then as I am now. My eyes watered. I could barely speak. I told him I had a medical condition and he still downgraded me to coach.

From my alopecia support group, I heard about a stewardess who was required to wear a wig on the plane when her hair fell out. Another girl was required to wear a wig at the reception counter at a gym. Seeing a bald headed woman, they were told, would make customers uncomfortable. The airline stewardess bought a wig. The bald gym receptionist quit.

How are we supposed to increase awareness about alopecia and hair loss in women if we are always covering it up?

Sure, there will always be a need for dress codes. No shirt, no shoes, no service at a restaurant. No midriff showing in the office. No Borat mankinis at the neighborhood swimming pool.

But it’s time to ask ourselves: Why is it that thigh dimples and dangling arm fat and hairless heads make us so uncomfortable?

So enough already! I’m heading to the shore today and I am packing tank tops, shorts, and a bathing suit. I might even bare my naked head. If you find any of it unsightly, then by all means, don’t look. But please, keep your mouth shut.

© 2009 Christy Bailey

Is beauty in the eye of the beholder?

"Women will never be equal to men until they can walk down the street bald and still think they are beautiful!" – Stephanie Hawkins*

For a bald girl, I am about as Out There as I can get without going bare. I wear scarves to weddings, dates, work, and job interviews – basically, everywhere. I talk comfortably about my alopecia with anyone who asks, and even those who don’t. And now I’m writing about it. In a public blog. Under my real name. (Honestly, I debated that, but opted for transparency.)

And yet.

I avoid mirrors, especially when my head is bare, like when I first step out of the shower.

After a shower, I still wrap my head in a towel.

Once I’m dry, the first thing I put on is my pañuelo.

Even when I’m alone, I wear a fleece hat to sleep, and not just because it warms my head.

I can count on one hand the people who’ve seen my naked head – two hands if you include doctors, wig store owners, and an arrogant photographer.

The other day, I am waiting at a bus stop in The District, wearing my gray pinstriped pantsuit, when an African American man in an oversized t-shirt, baggy jeans, and a New York baseball cap approaches me.

“You are lookin’ fine today,” says New York. “For a white girl.”

I look behind me, side to side, but see noone. Is he talking to me?

“Jenny Craig be workin’ on you.” His t-shirt hangs to the middle of his thigh. He’s probably a large, but the shirt is at least a triple extra large.

He must be homeless, I think. “I need Jenny Craig,” I say, emphasizing the word need.

“You look like that naturally? Ooh, girl.” He reeks of alcohol.

Ah, he’s drunk. I smile politely. “Thanks, I guess.”

“When I see something I like, I jus’ say it. And I gotta say, you look good.”

I look behind me, side to side, and see a young woman leaning against the storefront, her arms folded against her chest. She is watching us. I roll my eyes in her direction.

He is from New York, he says, tugging on the bill of his cap.

I nod.

He admits to having had a few too many drinks, but he’s in the midst of a divorce, and he’s drowning his sorrows. He doesn’t use these words, but that is the gist.

I look off to the distance as he’s talking, shift my weight from one foot to the other.

Finally, he gets the hint. “You have a great day,” he calls from the intersection, turning back for one last look.

Here’s the thing: My first reaction was to label him as crazy, an alcoholic, some sort of derelict. No man in his right mind would hit on a bald girl. Normal men don’t even notice bald girls.

I did not think, “I’ve still got it!” And I certainly didn't think, "I sure am beautiful."

The truth is, I struggle with my image. I truly believe that bald can be beautiful, but on other people. I don’t consider myself beautiful. When people say I’m beautiful, I don’t believe they mean it.

I am not alone. And this is not unique to bald women (though it very well may be magnified).

According to The Real Truth about Beauty Study, commissioned by Dove in 2004, more women are dissatisfied with their beauty than any other area of their lives, with the exception of financial success. Approximately $230 billion is spent each year by people around the world on products designed to make them feel more beautiful, yet a mere two percent of surveyed women described themselves as such.

As a child, I felt beautiful. I must have. Everyone around me said I was beautiful, and I believed them.

At what point, I wonder, did I stop believing? Was it when they stopped saying it?

Can you feel beautiful if nobody ever says you’re beautiful? If only your mom says it, or your grandma, or your spouse? Is it merely the sum of a lifetime of affirmations?

Is beauty a state of mind or a physical attribute, a weight, a shape, a hair length or color or fullness, the size of a lip pout, the upturn of a nose?

Is beauty defined by others, based on a narrow description created by a society of people, most of whom don’t even meet the strict criteria?

Does the criteria, by definition, need to be strict? If we all described ourselves as beautiful, if we all truly felt beautiful, would it dilute the meaning? If we all were beautiful, wouldn't beautiful be the new average?

I hope we get to find out.

And I hope I live to see a day where bald women walking down the street really do feel beautiful.

Check out the Dove Campaign and the research behind it.

* excerpt taken from "from WOMEN" by Stephanie Hawkins, published in Deluxe Rubber Chicken, a Web-based journal of poetry published from Cheektowaga, NY.

© 2009 Christy Bailey

It Starts at Birth

"It's a girl!" soon leads to comments about hair. "Oooh, what a head of hair!" they say. It's so soft, so dark, so blonde, so messy, so short, so long, so straight, so fine, so thick, so cute. Or maybe they don't say anything about the hair, just that it will grow in time. Which prompts Mom to run out and buy a hairband with a giant pink bow at Target. Girls learn from an early age that hair is important. Important enough to warrant dozens of hair decoration products and a drawer to store them in - metal clips and plastic barrettes and bobby pins and snag free pony tail holders with fabric flowers or tiny crystal balls. Important enough to demand daily attention - shampooing and conditioning and styling, often accompanied by the sweet scents of pineapples or tangerines or lilacs or spring meadows. Important enough to require suffering - the real tears cried when Mom brushes the tangles out of your hair. Important enough to garner compliments - and advice - from strangers. "What beautiful long hair you have, my dear, don't ever let your mommy cut it." Important enough to attract the gentle touch of loved ones, Mom running her fingers through your hair, Aunt Sally tucking it behind your ear, Daddy smoothing down a flyaway hair at a picnic, Grams caressing your hair as you tell her about your day.

I don't remember a time in my life when hair wasn't important. So imagine my surprise, and horror, when it all of a sudden fell out. I was 26 years old when alopecia areata attacked my hair follicles and robbed me of hair, and along with it, my drawer of hair decoration products, the required daily attention, the compliments, the caresses and strokes.

My journey to self acceptance has been a long one. A bumpy one. An emotional one. Along the way, I have come to know more than I ever imagined about treatments, and wigs, and beauty, and strength, and compassion. I've learned a lot about myself. And for reasons I can't explain in one single post, I've also learned about scarves, which have now become my hair - well, more like head - decoration product of choice.

Sometimes I think my journey is over. I've made my choice about how to present myself and I'm okay with it. I own it: the girl with the scarves. That's me. But I've also learned that journeys are never really over. Every day I face a new comment or challenge or dilemma. Every day I have to explain or justify my choice or even question it. Four million Americans suffer from alopecia, but three hundred million Americans don't. Of those three hundred million, many have never even heard of alopecia. And until everyone knows and understands and accepts girls without hair, my journey won't be over.

© 2009 Christy Bailey